Thursday, March 29, 2012

I might be bald before I turn gray...

Yes, I am talking about the hair on my head. Believe it or not, it has been over a decade since I have colored my hair. Over that period, I have basically become a simplistic type person - not much maintenance required. I believe we should be happy with what the Lord gives us, and if that means gray hair and wrinkles, I am perfectly fine with that. Actually, I tell people all of the time that I cannot wait to go completely gray - crazy - I know. But I LOVE gray hair!

Now on to the real story. If I do not get some answers about my son soon, I might just start pulling my hair out. That is where I am at right now. Can you say frustration?

I have posted in the past about Stephen and some of his delays. Just when I look at him and think, maybe, just maybe I have been wrong in my self-diagnosing with him, he proves otherwise. I am not going to go into every little detail, because quite frankly, that would require an entire novel, and I am not so sure you want to hear it all. Actually, there is so much going on daily, I just don't know how to describe my son in words.

**Just a little bit of background: Stephen had some delays when he was an infant, but nothing of any significance really (i.e. late sitter, late walker). At two, his pediatrician noticed that he didn't have the "normal" vocabulary of a two year old, so they recommended Birth to Three for early intervention. They worked with him in our home for seven months, and then helped us get him into three year old Pre-K special needs, because he was still not talking on his age level. Two things I found out during this period was that Stephen has Apraxia of Speech and Proprioceptive Sensory Dysfunction. I have in fact posted links for both of these diagnoses a couple of years ago. But, through school provided speech therapy (many, many thanks to Mrs. Crystal), Stephen;s expressive vocabulary exploded when he was four...to the point that he never.quits.talking now! Wow in a good way, and WOW in a bad way. He was in Pre-K for three years, because we felt it was better to hold him back that third year because he just wasn't quite ready for kindergarten. At his six year old well visit, his pediatrician got to see him in rare form (finally). She literally had to climb up on the examining table to get away from him. He was just all over the floor, and would not be quiet long enough for her to ask him questions (for developmental reasons). She finally got the gist of what I have been working/ struggling with for years. We chatted about what she was witnessing, and then she finally said it, "I think we are dealing with many different issues, and I am going to recommend that you have him evaluated by a whole team of behavioral specialists at Cincinnati Children's Hospital."

Fast forward to present. Stephen was placed on a waiting list with CCH in November, 2011. I called yesterday and was told that they are now seeing patients who were placed on that very same wait list in June and July of 2011. Come on people! Are you serious?

Stephen is just about to finish kindergarten. This year has been somewhat of a struggle for him, his teachers, and me. His classroom is large, so there are two teachers plus an aide. As with Pre-K, the kindergarten class operates on the Stop Light System (green being great behavior, yellow being stepping out of line somewhat, and of course, red being very bad behavior), only this year they are graded on it. They are learning what every normal kindergarten class should be learning, reading, writing, and math - along with art and music. Stephen struggles, on a daily basis. He is doing much better than he did at the beginning of the year, which is not a surprise, because I am sure every child in that class had problems with adjustment at first. However, some of his delays rear their ugly heads from time to time, such as the Apraxia. Now that he has conquered his speech delay, it now totally affects his writing. And trust me, I have heard this from his teachers, as well as experienced it for myself, if he doesn't want to do work, there is no forcing him. And if he doesn't have confidence in himself, he will not even attempt some things.

January was an amazing month at school for Stephen. He was "green light" every single day of that month. I thought, wow! This could actually be his turning point...he is actually "getting" it! In February, he had some "yellow" days, but nothing major...still not complaints. But March, oh my goodness! I don't know what has happened, but his notebook that he brings home each day looks like a Christmas tree. The yellows definitely outweigh the greens. :(

I still say that much of Stephen's problems is truly because he still, at almost seven years old, has not try concept of cause and effect. This breaks my heart. He has no idea that some of the things that he does is completely, off the charts, WRONG! And when we discipline him, he just doesn't understand. He understands that he is being disciplined, but just doesn't get that he is not supposed to turn right around and continue these behaviors. I am totally at my wits end!

I am going to write something that I don't talk about often with some of my family and friends, because they don't necessarily believe me, or think I am just overreacting. I am tee-totally, 100% convinced that Stephen is somewhere on the autism spectrum - pretty sure aspergers. A lot of people who are around him say, oh, he makes eye contact, talks, and is the most loving child, and children with autism do none of the above. That is simply because they are not completely educated on the spectrum, and they just think "he is just being a boy" and "needs his butt busted." Well, come stay with us for a day or so. You will see that he does get his butt busted, put in time away, grounded, etc. Nothing phases him...NOTHING! And yes, he is loving, talks, and makes eye contact, but most of the time, because he doesn't understand limits, he is overly all of the above! And the same goes for his meltdowns. When he is having a meltdown, it is overly dramatic, and lasts for long periods of time, most of the time lashing out at Todd (my husband), Luci (my dog), mommaw, or me. He does not know his own strength, and can truly hurt us.

I don't know why I am saying all of this, and now that I have written this much, I feel like it is just rambling, or a jumbled mess...see, I told you that I didn't know how to put it in words. I guess I am just reaching out to anyone who may be reading this and asking for you to take the time to educate yourself about the autism spectrum. These children are wonderful children, but they just need extra patience, love, care, and guidance. The CDC recently (within the past two days) released that 1 in 88 children are now being diagnosed as being on the spectrum. That is a pretty staggering statistic to swallow, but think about it. Many of the children you see out in public (I am not saying all of them) may have been affected by this. It would be better if everyone had some type of knowledge about this condition instead of just jumping to the conclusion that they are just bad kids or they have bad parents.